Special Report - Online activists are silencing us, scientists say Reuters March 2019

Thank you for the correction, I googled as well, but included New York in my search terms to ID the article I knew about and still got the name wrong. Interesting that it is being picked up in the States were the flaws in this research have been officially recognised, but not so far in the countries where the most eminent PACE appologists are located.

The Times sort of picked it up, not exactly, but kind of, sort of...

https://www.nytimes.com/reuters/2019/03/13/world/europe/13reuters-science-social-media.html

@MSEsperanza
@dave30th
 

Unfortunately I spoke too soon about other outlets not picking it up.

One wonders if Sharpe has ever considered that people with ME do not have the choice to walk away, despite the daily abuse and harrasment we experience from doctors or the child protection orders and sectioning that leads to physical abuse by forcing GET on people, that is directly linked to his psuedo science and his maligning an entire patient group.

Perhaps he and these 'journalists' should speak to patient groups about the medical profession's frequent insults and maligning of patients.

Kate Kelland put work in looking for comments about Prof Sharpe and did not come up with anything particularly significant, how about now looking at the patient forums to find examples of patients experiencing insults from the people who are supposed to help them.
 
I think that it's important people don't underestimate how harmful this stuff is for us. Even before the recent press coverage, PACE trial critics being viewed as 'radical and abusive' was an important impediment to making progress with the science. Excellent and skilled advocates being well informed, reasonable and cautious are still held back by this reputation causing problems. This is an important issue that makes it difficult to gain support amongst those whose support we need - and even before that, makes it difficult to get academics and researchers to take the time to even look seriously at the issue. It's drives away potential allies.

I don't see what we can do to improve things though. I think that there's value in constantly reminding one another of the importance of being cautious and reasonable with all on-line comments, but there is always going to be a minority that makes life worse for everyone. Can we do anything better? It breaks my heart that we've got @quasar9uk representing PACE trial critics in the UK media instead of someone like Tom Kindlon.

PS: The @quasar9uk story is the fifth main story on the Daily Mail's website.
 
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I'm disappointed with the NYT. They certainly saw how biased this piece is. At least they should have fact-checked the information given about David Tuller who also has written for the NYT:
One of those leading the campaign against research into psychological therapies for CFS/ME is David Tuller, a former journalist with a doctor of public health degree from University of California, Berkeley. Tuller, who describes himself as an investigator, not a campaigner, told Reuters he wants to help CFS/ME patients.

former journalist? Only has a doctoral degree but otherwise not affiliated with the UCB?
That's what his homepage at UCB says:
David Tuller, DrPH, is a senior fellow in public health and journalism at UC Berkeley’s Center for Global Public Health, which is part of the School of Public Health.
https://journalism.berkeley.edu/person/david_tuller/

For his recent contributions to "Bekeley Wellness", an online resource for evidence-based wellness information, see here: http://www.berkeleywellness.com/author/davidtullerdrph

Also, I think it would be good to confront Reuters and those papers that publish the article with @Jonathan Edwards' comment:

I am amused by this bit:

Reuters contacted a dozen professors, doctors and researchers with experience of analyzing or testing potential treatments for chronic fatigue syndrome.

Note the wording. Not just testing potential treatments but analysing them. What does that mean - analyse but not test. Presumably it refers to people who have reviewed evidence provided by the testers. That could include Cochrane reviewers perhaps? But could it not also include those who have similarly provided commentary in other peer reviewed publications.

Ms Kelland was specifically advised to contact me, as someone with expertise in the field, plus the useful, and rather unusual, quality of having no vested interest in any particular approach.

I had 'analysed potential treatments' in a paper in J Health Psychology.
I had analysed the analysis in a Cochrane review as a referee.
I was the only UK scientist to be recently asked to take part in an advisory board for the MRC on strategy in the context of inviting ME research proposals.
More generally I had been asked to advise, from an independent standpoint, in various ways, NIH, MRC, Wellcome, three ME charities, Cochrane, the UKME Biobank, etc. about the quality of ME research.

But it seems an independent view on research was not part of the agenda.

Edited for clarity.
 
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I think that it's important people don't underestimate how harmful this stuff is for us. Even before the recent press coverage, PACE trial critics being viewed as 'radical and abusive' was an important impediment to making progress with the science. Excellent and skilled advocates being well informed, reasonable and cautious are still held back by this reputation causing problems. This is an important issue that makes it difficult to gain support amongst those whose support we need - and even before that, makes it difficult to get academics and researchers to take the time to even look seriously at the issue. It's drives away potential allies.

I don't see what we can do to improve things though. I think that there's value in constantly reminding one another of the importance of being cautious and reasonable with all on-line comments, but there is always going to be a minority that makes life worse for everyone. Can we do anything better? It breaks my heart that we've got @quasar9uk representing PACE trial critics in the UK media instead of someone like Tom Kindlon.

PS: The @quasar9uk story is the fifth main story on the Daily Mail's website.

I've got mixed feelings about this to be honest. Although @quasar9uk's comments are in some ways a gift to Michael Sharpe - worse than anything that appeared in the Reuters story - he/she *still* manages to shoehorn into the published tweets that Sharpe spent £250,000 suppressing trial results, and that ill people are denied appropriate medical treatment as a result of Sharpe's work. And there's mention of Ron Davis in the article - including a picture of Whitney which helps show how serious the condition is - making it clear that he doesn't think much of Sharpe's research. And several of the people who've taken the time to comment are asking why on earth this scientist allows himself to be so easily distracted and dissuaded by social media comments...

It's still not a great article - but it's better than the Reuters one. And while I don't approve of @quasar9uk's abuse, I don't think their tweets are as damning as Michael Sharpe obviously does.
 
Allegedly representing.

Do we know for sure they are legit?

Could be a plant trying to stir up trouble against us.
Perhaps, but most probably not. I don't think it helps to suggest abusive people can't on occasion have an ME/CFS diagnosis. We are made up of all kinds of people.

It's up to the judgement of people on twitter, but surely they can challenge or report the behaviour.

edit changed one word for tone and spelling.
 
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One has to wonder how far up the management chain decisions about this reached. The new paper seems to be dated 12th March, the article was Wednesday so that was 13th March. Is there no thought of reputation for independence and the dangers of appearing to be just an arm of a particular campaign. We have come to expect that of the BBC so perhaps it is just the modern way. Perhaps reputation no longer counts for much.

EDIT cross posted with Sly
 
Although @quasar9uk's comments are in some ways a gift to Michael Sharpe - worse than anything that appeared in the Reuters story - he/she *still* manages to shoehorn into the published tweets that Sharpe spent £250,000 suppressing trial results, and that ill people are denied appropriate medical treatment as a result of Sharpe's work.

That will not be useful when someone is making a CFS related FOI and quasar9uk's tweets are being quoted to the ICO!

Who is going to be persuaded that Sharpe's work is causing problems for patients by quasar9uk's tweets?

Anything like this is really harmful.

There's nothing 'mixed' about quasar9uk's tweets. They're vile and they're going to be used to define the social media response the PACE trial researchers face. That's going to be terrible for anyone trying to challenge their work.

Someone just tweeting "charlatan" at Sharpe is completely unhelpful too. What would anyone think the benefit of it is? Are these news stories encouraging the view that insults and abuse on twitter are an effective way to get those responsible for poor quality work to leave the field, so people then think sending insults is a useful form of advocacy?
 
It would be a sad condemnation of psychiatrists if they were unable to distinguish problematic behaviours from normal responses and react appropriately to each. What could be the possible point of them. I am sure that most have no difficulty in this regard and do valuable work with those who need their services.
 
That will not be useful when someone is making a CFS related FOI and quasar9uk's tweets are being quoted to the ICO!

Who is going to be persuaded that Sharpe's work is causing problems for patients by quasar9uk's tweets?

Anything like this is really harmful.

There's nothing 'mixed' about quasar9uk's tweets. They're vile and they're going to be used to define the social media response the PACE trial researchers face. That's going to be terrible for anyone trying to challenge their work.

I completely agree with you that the tweets aren't helpful. But if readers of the Daily Mail can read quasar9uk's comments - embedded in an article that is broadly sympathetic to Sharpe - and conclude that Sharpe is exaggerating the scale and nature of the abuse he faces, I would imagine that the ICO will also take some convincing.

That's what I meant when I used the word 'mixed' - quasar9uk's tweets are clearly more abusive than anything that Sharpe fed to Reuters and yet it *still* stretches credibility beyond breaking point for him to claim that social media comments like this have forced him to stop working in this field.
 
I completely agree with you that the tweets aren't helpful. But if readers of the Daily Mail can read quasar9uk's comments - embedded in an article that is broadly sympathetic to Sharpe - and conclude that Sharpe is exaggerating the scale and nature of the abuse he faces, I would imagine that the ICO will also take some convincing.

That's what I meant when I used the word 'mixed' - quasar9uk's tweets are clearly more abusive than anything that Sharpe fed to Reuters and yet it *still* stretches credibility beyond breaking point for him to claim that social media comments like this have forced him to stop working in this field.

The ICO already classes some requests related to CFS as vexatious seemingly for no reason other than that the request is related to CFS and there is a concern about a campaign of intimidation. Things are already really bad for us, and tweets like this are going to make them even worse. We need to gain influence within the UK Establishment, and that culture is not keen on outsiders challenging authority figures to start with.

edit: Also, I think that there are lots of academics who would not want to work in a field that led to them receiving comments like that.
 
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